Tip of the Week: Feeling Alone

Raising a non-typical child can be a lonely place; raising a child diagnosed with PWS multiplies those feelings because of the rarity of the syndrome. You get advice to not compare your child to your friends’ children, but it is unavoidable. You are enraged when you see pity in people’s eyes and you go to sleep wondering how you will make it another day.

But you will make it another day—and many more after that—because as bad as some days get, there are more days that are filled with joy. Reach out to other parents every chance you get. Find parents on social media, through local agencies who serve individuals with PWS (I promise, they exist no matter where you live), and make every effort to attend your state’s PWS chapter meetings. If your state doesn’t have an association then start one! You are not alone. If you need help connecting, call us and we will get you started. Your road is a hard one, but it will be filled with the most incredible days and in the end, worth every minute. Never hesitate to reach out to us if you are in need of resources, advice, or just someone to listen.

Patrice Carroll is Latham Centers’ world-renowned Prader-Willi Syndrome specialist. She works with Latham Centers’ residents with PWS, their families, and consultants, continuously learning and teaching about PWS best practices.